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The other side of cancer: How survivors are dealing with the emotional toll of the disease

Author of the article:

Elizabeth Payne

Publishing date:

December 7, 2018 • 13 minute read

This is a cancer survivors boot camp or a fitness camp for people who loved ones have died of cancer.Photo by Tony Caldwell/ Postmedia

At times, Donna Jakowec’s cancer journey felt more like a frantic struggle to keep her head above water.

“I felt safe when I talked to the doctors, but between appointments I was having terrible feelings of panic. The doctors represented these islands. When I was finished with one doctor, I was forced to swim in the ocean to the next island, and I felt like I was drowning the whole way.”

Psychosocial symptoms have been called the sixth vital sign of cancer, after body temperature, blood pressure, pulse, respiration and pain. And, although it is increasingly recognized, gaps remain in treatment and support for the emotional and psychological impact of cancer.

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In Ottawa, at the Ottawa Regional Cancer Centre, and elsewhere, it is now routine to screen cancer patients for psychosocial symptoms, such as anxiety and depression while they are undergoing treatment. Patients, including Jakowec, are offered counselling, support groups and other services in addition to chemotherapy, radiation and surgery, if needed. But the services are not consistent across the province.

For many, the full emotional impact of a cancer diagnosis doesn’t hit them until they finish treatment and start to process what they have been through. For those patients, who can struggle for months and years with the mental-health after-effects, there is often limited or inconsistent support. Some struggle alone; believing what they are experiencing is normal. Some develop post-traumatic stress disorder, known as PTSD. Others pay for psychological treatment to cope. Others find support from those who have been through the same thing.

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Donna Jakowec has survived two different forms of cancer.Errol McGihon

Jakowec was 54 when she was diagnosed with breast cancer in 2016. That was the same age her mother had been when she learned she had breast cancer. Jakowec’s sister also had breast cancer; she was in her late 40s when she was diagnosed with an aggressive form of breast cancer. She died three years later.

The news of her own cancer hit Jakowec like a lightning bolt, especially given her family history. She says she would sometimes find herself frozen, staring at a wall, wondering: “What is going to happen to me?”

A runner and avid cyclist, she returned to running as soon as she could after surgery and radiation, in part, to help deal with the anxiety and sense of panic. “It sort of took the edge off, but it didn’t take it away.”

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As she recovered from the active phase of cancer treatment, surgery and radiation, her family and work, driving her two children to sports and music lessons, filled her days and kept her busy. But nights were given over to worry and fear, especially that cancer would return.

That lingering anxiety turned to shock when her fear was realized and Jakowec was diagnosed with a second, unrelated cancer.

She had begun experiencing radiating numbness that started under her rib when she ran. Eventually, she had to stop as the pain and discomfort worsened.

Around the same time, because she had finished treatment, she was transferred from active cancer care to a program called Wellness Beyond Cancer. During her first meeting, the nurse practitioner she was assigned to asked whether anything was bothering her. Jakowec described her symptoms and was sent for a CT scan, which revealed the problem: a gastrointestinal stromal tumour inside her stomach, unrelated to her breast cancer, news that left her reeling.

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In June, the tumour was successfully removed through laparoscopic surgery, which left her with just two small scars. No other treatment was required and the prognosis is excellent. The chances of it recurring, Jakowec was told, are less than three per cent.

But there were other lasting effects.

Having a second cancer diagnosis in two years was devastating for Jakowec. Her anxiety and fear returned with a vengeance. She thought she was going to die.

“I am actually confident it is not coming back,” she says of the stomach tumour. But the experience has heightened her fear that her breast cancer will return.

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“Because I experienced a second cancer, I am much more worried I could have a recurrence (of breast cancer).”

Donna Jakowec.Errol McGihon

Her fear of recurrence was, no doubt, heightened by her own experience and her family history, but Jackowec is far from alone.

She was referred to a psychologist working with The Ottawa Hospital’s cancer program for help coping with her fears and anxiety, which she says is helping. She also volunteered to take part in a research study looking at fear of recurrence among cancer patients.

And she continues to rely on exercise and fitness to reduce her anxiety and help her cope. In September, just a few months after her surgery for a stomach tumour, Jakowec completed The Ottawa Hospital’s 117-kilometre cycling fundraiser for cancer research.

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Still, she believes the psychological impact of cancer may last for years.

Fear of the disease returning is the elephant in the room for many cancer patients, especially as they try to return to their normal routines after intensive treatment.

“It sort of hovers around all discussions of how we are mutually doing,” says Andrea Douglas, an Ottawa breast cancer survivor who volunteers to help other survivors. She helps with peer support for cancer patients, began a support group for survivors, takes part in a boot camp for cancer survivors and has organized a fundraising masters swim meet to raise money for the Ottawa Breast Health Centre.

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She and other cancer survivors say they found themselves drawn to others who had been through similar experiences for support after being diagnosed. They exercise together, laugh together and learn from each other.

Even among those supportive groups, Douglas acknowledges, the deep fear of cancer returning is seldom discussed.

Ottawa researchers Dr. Christina Tomei, a clinical psychologist in supervised practice who works in the faculty of medicine at the University of Ottawa, and Dr. Cheryl Harris, a clinical psychologist, professor and researcher who works with cancer patients in Ottawa, are hoping to help cancer survivors better cope with that fear.

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Because there are so few published therapies to help treat patients who are gripped with fear that their cancer will recur, the researchers and others wanted to better understand the phenomenon and how to treat it.

They conducted a small trial in which randomly assigned patients took part in six weeks of specialized therapy that helped participants address their fears head on.

Some of the patients’ fears and thoughts could be “fairly catastrophic,” said Tomei. The goal of the therapy was to get them to look at their fears in another way.

“It is not about positive thinking,” added Harris, “but what is the reality of my situation instead of going to worst-case scenarios?”

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Harris describes the therapy as giving patients a “toolkit” of alternative approaches from which patients can choose which works best.

“There have been patients who have said ‘I used to just panic to the point of not being able to think clearly and now I am able to redirect my anxiety and think it through.'”

As a result of the pilot study, patients found they were better able to tolerate the unknown, she said. The research will expand and continue.

Understanding the impact of cancer on a whole person is something that is getting increasing attention, Harris said.

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“Cancer is challenging, not only physically, but emotionally.”

It puts stress on a patient’s family, can add significant financial burden and even a spiritual burden.

“There is definitely a trend toward this whole-person kind of approach,” which recognizes issues beyond physical, said Harris. “We know that a significant number of patients will come through their cancer experience without needing the help of a psychosocial program, but there are a number who will be in severe distress.”

A cancer survivors boot camp in Ottawa.Tony Caldwell

While there is a growing focus on the importance of psychological and other psychosocial support for cancer patients, gaps continue to exist — especially for patients who have finished treatment, but also for those still receiving treatment.

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In a report released earlier this year, Cancer Care Ontario, the agency responsible for improving cancer services in the province, underscored the importance of complete, well-funded psychosocial oncology services. The report also raised flags that the services are inconsistent.

Through better co-ordination, including the use of telemedicine in remote and rural parts of the province, all patients should have timely access to psychosocial interventions, Cancer Care Ontario recommended. That includes access to psychiatrists, social workers and psychologists as well as spiritual-care providers. It also includes access to rehab and physical therapy services for those experiencing physical functioning issues.

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One patient adviser told Cancer Care Ontario that she struggled with emotional symptoms after surgery but it was only because her mother saw a flyer about connecting with a social worker that she received help.

“Screening for psychosocial oncology issues should be treated like any other diagnostic tool, like a CT scan or blood work, with followup and referral for services. It can’t just be left to chance.”

Cancer and fear, by the numbers

Recent research from the Canadian Partnership Against Cancer found that while patients might be receiving excellent cancer treatment, many experience significant emotional and physical side effects that are not being adequately treated:

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25% — Patients who said they were not satisfied with the emotional support they received during outpatient cancer care

70% — Patients who reported having emotional challenges after their treatment ended. Among their biggest concerns was worry about cancer returning

80% — Cancer survivors who reported having at least one ongoing emotional challenge one to three years after completing treatment

Fewer than one third — Cancer survivors sought help from a health-care provider for their emotional concerns

33.7% — Patients who did not seek help for emotional concerns after completing cancer treatment said they were told it was normal and didn’t think anything could be done about it.

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Sources: The Canadian Partnership Against Cancer: Living With Cancer: A Report on the Patient Experience (2018); and Experiences of Cancer Patients in Transition (2016).

But for patients who have finished treatment, there are often few options.

The emotional after-effects of cancer are widespread and, in many cases, patients are not receiving the care they need, especially after they are finished active treatment, according to a report from the Canadian Partnership Against Cancer released in January.

According to the study called Living with Cancer: A Report on the Patient Experience, seven in 10 patients reported having emotional challenges after treatment ended: “Worry about cancer returning, depression and changes in sexual intimacy were their biggest concerns.” Worry about cancer returning, according to the research, was the most difficult concern for which to get help.

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According to the research, more than one in five cancer survivors were told their emotional challenges were normal “and thought nothing could be done about them.”

Fewer than one-third of cancer survivors sought help from a health-care provider for their emotional concerns.

“Cancer survivors often have difficulty identifying and expressing emotional concerns,” said the report. “They also have a tough time seeking help, especially when they lack a clear understanding of the range of services and supports available.”

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Of those who sought help for emotional concerns, 60 per cent waited more than six months for help, according to the study. As many as 30 per cent of survivors surveyed said they relied on family and friends to help them through their emotional challenges or dealt with their concerns alone.

Some, such as Sandra Dudych, a 59-year-old patient adviser with the Canadian Partnership Against Cancer, never really recover emotionally and have difficulty getting the right kind of help.

Dudych, from Winnipeg, now suffers from PTSD after being diagnosed with and treated for aggressive breast cancer when she was 51. Research has found that as many as 20 per cent of cancer survivors will develop PTSD.

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Her treatment was fraught with complications, including infections that required additional hospitalizations. She also suffers from chronic pain related to nerve damage from surgery and ongoing cognitive difficulties related to chemo, which can sometimes affect memory and executive brain function, often temporarily.

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Dudych said she had never suffered from depression or anxiety prior to cancer. Now, she struggles with PTSD, something she says is related to the cumulative effect of diagnosis, treatment, complications and lingering effects of cancer.

Dudych received psychosocial services, including from a social worker, when she was in active treatment. But she was not diagnosed with PTSD until six years later, because of the cost and limited insurance; she is not receiving any psychological support.

Survivors are largely left to deal with their emotional aftermath of cancer with their primary health-care providers, she said, and if they have financial means, private practice therapists.

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“The medical professionals rally around you when you are in active treatment and then you are discharged and the ability to access resources is not as easy,” she said.

“You just realize what hell it is to get through cancer, to survive treatment. It is not easy while you are in it and it is not easy after. For me, the longer-term effects are not going to go away. It is part of my new reality.”

This is a cancer survivors boot camp or a fitness camp for people who loved ones have died of cancer.Tony Caldwell

A group of breast cancer survivors who gathered in an Ottawa living room recently share a bond that has kept many of them volunteering, working out and laughing together for years. The mutual understanding helps their emotional health and coping skills, they said.

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“When I went into (cancer treatment), I thought I had all these incredible coping skills. I felt I was really mentally strong. I was running marathons. I knew how to get myself across the finish line feeling like absolute crap,” said one woman.

“And I remember distinctly coming out of the anesthetic after my mastectomy and thinking ‘It is all gone. I have nothing left mentally.’ It was almost a panic. It’s hard enough physically, how do you get it back mentally?”

She said connecting with other women who had breast cancer for fitness “was huge. I can exercise with these women who just get me.” For many of the women, the mutual support and advice is as important as the exercise. Others belong to support groups, do peer counselling, volunteer and socialize with others who have also had breast cancer.

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But mutual support is not always enough and some cancer survivors are on their own to find psychological support when they need it.

“After active treatment, that is when I hit the wall and I stopped dead and thought ‘What just happened here?'” said one woman. She found little support through psychosocial services (and was told the professional available through the cancer program was busy working with palliative cases.)

The woman, who is self-employed and had to take time off work during cancer treatment, has to pay for a therapist and struggled to “find somebody who deals with this kind of thing.”

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Are there gaps in psychosocial supports? Yes, she says.

When Donna Jakowec agreed to take part in the 117-kilometre cycle for cancer research in September while recovering from cancer surgery, she was asked to join a group that called themselves cancer survivors. Jakowec agreed to join the fundraising team — but only if they changed their name.

“I said ‘I don’t feel like a survivor right now.'”

They became the “cancer crusaders” instead.

Jakowec said she looks forward to a time when cancer doesn’t consume her thoughts, but knows that could be awhile.

“I want this to fade so it doesn’t define me and right now it consumes me. As soon as I wake up, I think about my cancer and when I go to bed I think about my cancer. I think it is going to be years before I stop thinking about my cancer.”